Lessons learned from the impact of Covid‐19 on the work of disability support organisations that support employers of social care personal assistants in England

Abstract Social care Personal Assistants (PAs) are directly employed by individuals to assist with activities of daily living such as help or support with personal care, shopping, household tasks and community participation. This option is encouraged by UK public funding. In England, disabled people's support organisations initially offered assistance with such arrangements, although numbers doing this have declined. The Covid‐19 pandemic provided the opportunity to ask those remaining organisations providing support for PA employers about their activities during this time and the questions being posed to them by PA employers. This paper reports data from 15 interviews undertaken March–July 2021 with disability support organisation representatives. We identified one overarching theme ‘Working to prevent and challenge marginalisation of PA employers’, with three related subthemes: (1) Advocating for the voice of a forgotten group; (2) Needing to be proactive and (3) Adapting to new tasks and ways of working. Participant accounts focused on representing the needs of disabled people to the authorities and providing concise, timely and accurate information to PA employers, particularly around the use of public funds during Covid‐19. Remote working amplified the digital‐divide, resulting in these organisations working hard to ensure PA employers received important information about their support options. Befriending services and Covid‐hubs were established by some organisations to reduce isolation and risks of poor mental health amongst PA employers. Many of the challenges facing PA employers existed pre‐pandemic but were perceived to have been heightened during it, reflecting the value of and need for the work of these local support organisations. Our findings suggest areas where effective contingency planning drawn from closer collaboration between disability support organisations and central and local government might usefully be focussed. The potential for specific services or organisations to be commissioned to provide such support is discussed.


| INTRODUC TI ON
There is increasing interest internationally in the potential for individualised funding to support the well-being of people needing care and support (Fleming et al., 2019). In England, this is aligned with the personalisation agenda and independent living movement (ILM), where choice and control are at the forefront of policy statements to enable independent living for people with care and support needs.
The option of 'cash for care' through personal budgets (i.e. a direct payment [DP]) was promoted to implement these policy goals, aiming to transform social care in England by empowering the budget holder or care user to be in control of designing, resourcing and budgeting of their support (Miller et al., 2021). Employing Personal Assistants (PAs) was advocated as providing a more personalised relationship between the employer and their support staff. PAs are employed directly by care users (although some are self-employed and so responsible for their own tax and National Insurance contributions), or by a proxy (generally a family member). While many employ a PA using Local Authority (LA) funding in the form of a DP, others pay for a PA privately using their own resources.
In 2020/2021, approximately 70,000 people (30% of all people receiving DPs) were eligible for LA funding to help with achieving well-being goals (after meeting needs and means-tested criteria) by directly employing their own care worker(s) (Skills for Care, 2021a).
Employers of PAs are subject to the same employer rights and responsibilities as others, although few undertake employer-related training (Skills for Care, 2021b), despite the administration involved (McGuigan et al., 2016). In response to early calls for user-led or peer-support organisations (see Evans, 1992), disability support organisations, including Centres for Independent Living (CILs) and brokerage agencies, were funded by some LAs to support PA employers, or assist with support planning (Williams et al., 2014). Such support may be user-led, covering assistance with recruiting PAs, providing training, managing DPs and administrative responsibilities such as signposting to payroll services. In a survey of 1636 individual employers, almost half of respondents (46%) had accessed information from a disability or local support organisation in 2020/2021 (Skills for Care, 2021b); although this may reflect the distribution of its survey via support organisations. Currie et al. (2016) reported LAs finding it difficult to commission such personalised provider organisations (i.e. peer-led brokerage services) due to funding cuts and closures. While valued, such peer-support organisations are in decline in the UK (Hyslop et al., 2020).
Covid-19 created multiple challenges for people with care and support needs who faced increased risks of physical and mental health deterioration, severe illness, hospitalisation and death (Comas-Herrera et al., 2020). To date, much attention has focussed on care home residents or specific user groups such as people affected by dementia and carers (Giebel et al., 2021). PA employers' experiences are under-researched, and little is known about their care and support needs during the pandemic, or the sources of support that were available to them during this time. Disabled people felt largely forgotten during the pandemic at global and national levels (Courtenay & Perera, 2020;Shakespeare et al., 2021;Shakespeare et al., 2022). A study of PAs in the early months of Covid-19 in England found that many PAs decided to stop working or were asked to stop working by their employer due to the risk of virus transmission (Woolham et al., 2020). Other PAs, in contrast, were sometimes replaced by a family member because care needs still had to be met. Of those retained by their employer, PAs reported very limited work-related information or support during the early months of the pandemic, such as information about the virus, practical arrangements including getting tested for Covid-19 or accessing personal protective equipment (PPE), and some reported lack of clarity about their 'keyworker status' (ibid, 2020), categorised as those working in 'essential' occupations and industries (i.e. 31% of key workers worked in health and social care) (Office for National Statistics, 2021).
Our objective in this study was to understand the views and experiences of people working in disability support organisations that provide support to people employing PAs and to learn if and how these organisations adapted in response to the needs of disabled people employing social care PAs during the Covid-19 pandemic.
We sought to provide a preliminary overview of the questions that participants working in these organisations found were frequently What is known about this subject raised by PA employers, and also how the work of support organisations at local level was changing in response to the pandemic. This study was a preliminary to conducting a wider ongoing study of PA employers and informed data collection with individual employers; these findings are reported elsewhere (Leverton, Samsi, Woolham, & Manthorpe, under review).

| Design and recruitment
This qualitative study was part of a wider 17-month study (reported in Leverton, Samsi, Woolham, & Manthorpe, under review). In this phase, semi-structured interviews were conducted with staff working in organisations that provide support to people employing PAs, including user-led disability support organisations, brokerage agencies and LA-linked support services (i.e. payroll services). We used a purposive sampling technique, initially identifying support organisations that varied by geographical location, type of organisation (i.e. CILs; brokerage agencies; or LA-linked teams), type of support provided (i.e. DP support; help with recruiting PAs). We also contacted support organisations by phone or email that had taken part in a previous study of PAs in 2018 (Woolham et al., 2019), who had given permission to be contacted again for further research.
We provided information on the study by email, including contact information for the research team for potential participants to express interest, and asked for our study information to be shared with other staff. We purposively sought staff in different roles to gain a range of perspectives. Potential participants were offered the choice to be interviewed by tele-

| Data collection
Interviews took place between March and July 2021. Participants had the opportunity to ask questions about the study, before providing informed consent. Participants were assured that their data would be handled securely, and informed of their right to withdraw from the study. The consent process was audio-recorded and stored separately to the interview recording to uphold confidentiality and anonymity. Participants were asked to verbally respond to a short demographics form before beginning the interview. A semi-structured interview guide was used to cover main topic areas, including: (1) an overview of their role; (2) implications of Covid-19 on their work; (3) contact with LAs and other support sources; (4) payment for PAs; (5) advice and support for PA employers; (6) future considerations. Interviews lasted up to one-hour and were audio-recorded (with consent) and transcribed verbatim. Participants were thanked for their time and posted/ emailed a £20 shopping voucher.

| Data analysis
Interview transcripts were checked and pseudo-anonymised to protect the privacy of participants and their workplaces. All transcripts were then read in detail and Framework Analysis (Ritchie & Spencer, 1994) was applied to look for patterns and themes across the data. This approach is extensively applied in social and health sciences research as a robust method used to capture the experiences of participants (Parkinson et al., 2016). Leverton conducted the primary data analysis, with secondary support from Samsi, following the five-step approach to Framework Analysis: familiarisation; identifying a thematic framework; indexing; charting; and interpretation (Ritchie & Spencer, 1994).
Full team discussions were held to check and validate the initial framework and developing themes. The research team held varied backgrounds and perspectives, including social care researchers with experience in DP studies, homecare and workforce research; minimising the risk of interpretation bias. The advisory group included people using DPs, social care support organisations and social work practice.

| Participant demographics and organisation information
We interviewed 15 participants, working across 11 organisations in England, who provide support to PA employers, amongst other activities. Staff roles included Chief Executive Officers, a Chief Operating Officer, DP Team Leaders/Workers, Personal Budget Coordinator, Managers, a Senior Commissioning Manager, a Director, Administrators and a Senior Information Officer. Six participants employed their own social care PA. All but one of the 11 organisations were user-led registered charities, such as CILs or disability support organisations; the remaining organisation was an LA-linked DP service. Organisations covered geographically varied regions of England. Table 1 provides participant demographic and organisation information.

| Themes
In response to our study objectives, we identified one overarching theme demonstrating the impact of Covid-19 on the work of disability support organisations, titled 'Working to prevent and challenge marginalisation of PA employers'. Across three related subthemes, we describe how participants worked to achieve this by (1) Advocating for the voice of a 'forgotten' group; (2) Needing to be proactive and (3) Adapting to new tasks and ways of working. Each subtheme is summarised in Table 2 and detailed after with supporting quotes for context.

| WORKING TO PRE VENT AND CHALLENG E MARG INALISATION OF PA EMPLOYER S
Participant accounts described ways in which people with care and support needs were disadvantaged throughout the pandemic. Whilst many of these reported problems existed long before Covid-19, they were perceived to have been heightened and exacerbated during this time. New and changed ways of working were discussed in relation to how these organisations responded to the needs of PA employers.

| Advocating for the voice of a 'forgotten' group
PA employers were perceived as a largely forgotten group, particularly in the early months of the pandemic. Recognising that PAs and their employers were left out of early decisions and guidance, participants tried to represent the voices of this group at local and national levels. Participants said they had actively campaigned and worked closely with their LA adult services department to advocate for the inclusion of PA employers and the PA workforce in ongoing arrangements and crisis planning throughout the pandemic: "Behind the scenes, what we were doing was constantly campaigning to social services to treat PA employers equally and carry that knowledge that these keyworkers [PAs] needed as much protection as people working in any other part of the care sector, including their own."

[Participant 14]
Crisis planning and initial arrangements focused around people living in care homes or those in hospitals, while people receiving care in their own home were perceived as an 'after thought'. Participants believed this was evidenced by the exclusion of PAs in the initial instructions from central government and LAs when talking of 'essential' or 'key workers'. The consequences of this were reported by participants whose work involved supporting PA employers to navigate guidance around social distancing, while needing continued support from their PA. For example, without PAs being recognised as essential workers early on, employers faced the risk of their PAs being unable to access priority shopping hours during the first national lockdown (and so were having to mix with more people at busier times), and had found it difficult to acquire Personal Protective Equipment (PPE) or testing for Coronavirus for themselves and their PAs. When reflecting on conversations with PA employers, particularly in the first few months of the pandemic, participants described high levels of stress resulting from government guidance, with many feeling unable to manage without their PA: "They weren't sure what they should do with their PAs, whether they could tell them not to come for work, but then how would they get their support?"  The need to be proactive was reported as a response to a lack of timely guidance and information coming from central government and LAs.
As noted above, many contrasted the focus on care homes and the NHS to the lack of focus on disabled people living at home.
Working relationships with LAs varied. Some participants spoke of a close working relationship between their organisation and the LA that had existed before the pandemic and continued throughout.

| Adapting to new tasks and ways of working
Covid-19 abruptly changed not only the everyday tasks of participants but also the way that participants worked. Whilst working remotely created various challenges to supporting PA employers that participants tried to overcome, the ability to work from home was described as a welcomed change, particularly by participants who identified as disabled people.

| Creative solutions to overcome barriers to supporting PA employers
While some new tasks such as wellbeing checks and liaising with insurance companies became more frequent, participants reported that much of their normal work before the pandemic had substantially reduced or became more difficult to achieve remotely, such as supporting people to recruit PAs and visiting them at home to help them complete documentation. Approaches taken by support organisations to overcome these issues were described; for some this included changes such as an easing of previous data protection rules so that staff in these organisations could share the names of PAs and employers with whom they were in contact with the LA. Others began moving towards more systematic practices, including collecting names of PAs to form a register or list (something not done previously), so that people working as PAs could access to the same resources as other essential or key workers, including PPE, testing and early access to the vaccine which participants felt was a needed change, given the situation: "We were actually able to supply our LA partners and This divide made it even more important for support organisations to work quickly and proactively in sharing information widely and maintaining a local presence within communities, as described above.

| Reflecting on the longevity of remote working
Despite these challenges, many participants spoke about the positive impact that Covid-19 had on their own work life, including the view that working remotely and digitally was a welcome change that often helped to speed up tasks and improved accessibility for disabled staff, some of whom did not previously have this as an option: "…it's given us a lot more flexibility to do that. I mean, I've got to be honest, personally, it was getting hard getting out of the car every day and, yeah, it's winter, I've got to drag my wheelchair and do all that kind of stuff. Being able to work from home two or three days a week has been very beneficial."

[Participant 13]
However, for some, this was overshadowed by concerns that prolonged or continued remote working would heighten isolation and take its toll on mental wellbeing: "It was tough, like, the mental side of not seeing anybody, so you had to learn your own coping strategies as well as working and supporting other people." [Participant 8]

| Summary of main findings and implications for policy and practice
Through qualitative interviews, we sought to understand the views, experiences and impact on the role of people working in organisations supporting PA employers during the Covid-19 pandemic.
Much of the work carried out by disability support organisations throughout the pandemic focused on preventing and challenging the marginalisation of an already disadvantaged and vulnerable group. Participants reported working proactively from the start of the first national lockdown, anticipating the needs of PA employers and delivering information in a more person-centred and timely way than they felt was being achieved by central and local government.
Similarly, reporting on the experiences of disabled people using social care in the time of Covid-19, Pearson et al. (2022) suggested that the failings of LAs were detrimental to independent living for people with care and support needs. It was a common perception that participants in our study felt their work was compensating for the failings of LAs.
While it was generally agreed that LAs did provide information for PA employers during the pandemic, this was judged as overcomplicated, too slow and not specific to the needs of PA employers. This extended to a view that those working in LAs and government did not understand the needs of disabled people, nor the work carried out by PAs, warranting ongoing communications and closer working between disability support organisations and central and local government. In line with this, Pearson et al. (2022) reported that a lack of understanding around the PA workforce, the ILM and the DP system was evidenced by the insufficient responses of many LAs towards disabled people's support needs throughout the pandemic.
Participants discussed often using personal judgement when advising employers of what they perceived to be the best thing to do in the absence of appropriate formal guidance; namely, helping employers to maintain a relationship with their PA throughout the pandemic, which required to be continued payment even if the PA had stopped working (i.e. in times of national lockdown).
The International Federation of Social Workers echoed this as an approach taken by social workers when deciding whether to follow official guidance and organisational policies during Covid-19 (Banks et al., 2020). This points strongly to the absence of these workers   (Jesus et al., 2021;Mehrotra, 2021). 'Good' disability support organisations were reported as those who not only anticipated the threat of a digital-divide, but worked quickly to minimise it, that is by reallocating budget to fund online access and electronic notebooks for people at risk .
Participants reported creative solutions taken by their support organisations to minimise this divide, such as holding a physical presence within local communities (e.g. Covid-19 hubs) to reach wider audiences.

| What does this mean in the current context?
It is important to consider the context in which these findings are embedded. The DP system, with its rejection of 'services' and transfer of power to enable service users to employ staff of their choice and under their direction, emerged directly from the ILM.
Prior to the pandemic, lack of interference or regulation was what many PA employers seemed to value to sustain choice and control (Woolham et al., 2019). When the pandemic began, it was seem-  (Tuijt et al., 2021). This suggests the picture of isolation may be incomplete, or those DP users were seen as able to manage independently; research is presently exploring their perspectives (Leverton, Samsi, Woolham, & Manthorpe, under review). Moreover, although participants reported a lack of collaboration between central/local government and disability support organisations in crisis planning, these organisations' own contingency planning was not evident, highlighting a nationwide lack of preparedness to plan and develop useful protocols, policies and guidance that are inclusive of disabled people in times of crisis (Boin et al., 2020). These failings provide important lessons for systemic and organisational change to ensure effective contingency planning that is inclusive of people with care and support needs, including those living in the community.
From the outset of the ILM, support organisations were pinpointed as key to successful policy implementation (Department of Health, 2000;Evans & Hasler, 1996), yet organisations such as CILs have struggled to secure sufficient funding to expand and reach diverse user populations (Pearson, 2004). More recent reports have shown that LAs struggle to commission personalised provider organisations (e.g. peer-led brokerage services) due to widescale funding cuts (Currie et al., 2016). The need for their own LA-linked services to provide support to people employing PAs was argued by participants. They seemed to be developing a case for sustained funding for both advocacy activities and services for PA employers.
One gap in the narrative was the position of the many people privately funding their PAs. They remain largely unknown to LAs but also to organisations that might be able to support them. While participants described a clear commitment to PA employers and disabled people more widely, this did not extend to PAs who were not regarded as within the remit of the organisations interviewed, other than the LA-linked service.

| Strengths and limitations
This is, to our knowledge, the only study to explore the impact of the work carried out by staff working in organisations that supported PA employers during the Covid-19 pandemic. We included organisations from geographically diverse locations across England, and interviewed participants working in varied roles to ensure a representative sample. However, there are limitations to this study.
First is the risk of this being a self-selecting participant group with self-reported data. Second, there are limitations relating to recruitment, including an absence of staff working in support organisations offering brokerage services, as well as a lack of applicability to employers privately funding their PAs. This potentially reflects an under-representation of these services in England, and a sparsity of support for individuals self-funding their PAs. Third, is the lack of PA employer voices to reflect on the support they received from these organisations (reported separately elsewhere), and the lack of LA perspectives on their own pandemic actions for people using DPs to fund their care.

| CON CLUS ION
Prior to Covid-19, the complications of managing DPs were observed in many studies of PA employers. This present paper provides another perspective from staff working in organisations seeking to offer support to PA employers during the pandemic in England. We further highlighted the frustrations experienced by staff in these organisations around the perceived inflexibility of the DP system, as well as the proactive approaches (e.g. befriending services) they used to support some employers through this challenging time.
While a small-scale study, it has implications for local and central government in considering ways of collaborative working with disability support organisations to better understand and respond to the needs of disabled people. Our findings suggest systemic and organisational change is required to embed effective contingency planning into policies and guidance for planning, with and for people with care and support needs residing in the community. The data reported here suggest areas where such planning might usefully be focussed and the potential for specific services or organisations to be commissioned to provide such support.

AUTH O R CO NTR I B UTI O N S
KS was Principal Investigator; KS, JW and JM contributed to the study design. ML was responsible for conducting the study, including data collection and analysis. KS contributed to the development of themes, and JW and JM provided support with interpreting the findings. ML led the writing of the manuscript, and all authors contributed to revisions in producing the final manuscript.

ACK N OWLED G EM ENTS
We thank all participants and our Study Advisory Group for valuable steer and advice. The study is funded by the National Institute

CO N FLI C T O F I NTE R E S T
The authors declare no conflict of interest.

DATA AVA I L A B I L I T Y S TAT E M E N T
Research data are not shared.